How Far Would You Go to Save Your Child?

It's dinnertime at Liz Gorman's sparsely furnished rental home in Colorado Springs. Her daughter, Maddie, 8, is strapped into her high chair, holding her favorite toy, a pink plastic teapot, and watching The Wiggles on TV. In this episode, a character named Miss Polly is having her ailing doll examined by "Dr. Sure." "Miss Polly had a dolly who was sick, sick, sick, so she called for the doctor to come quick, quick, quick," sings Liz, 36, a pretty brunette, as she tries to sneak a morsel of chicken into her daughter's mouth.

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Maddie waves the teapot, agitated. "Ha," she says.

"Hard. It is hard," replies Liz sympathetically. Maddie has been coming off of one of her medications and is not her usual smiley self.

Liz leans in and rests her cheek against her daughter's. "I love you, monkey. Would you like some cookie?"

"No!" says Maddie, hurling the tidbit. Liz sighs. The sun has set outside their picture window, obscuring the view of the Rockies' Front Range, where she often runs to clear her head. In 40 minutes, Maddie has had five bites of chicken, a few grapes and a cup of coconut-pineapple juice. "Eating is always dicey," Liz says. "But she's actually gained five pounds in the last year."

Maddie has Lennox-Gastaut syndrome (LGS), a severe form of epilepsy that strikes about two in 100,000 kids a year. Since her seizures began when she was 2, Liz and her husband, Brandon, 37, a Marine Corps infantry major, have tried everything mainstream medicine has to offer, from 14 antiseizure medications to a high-fat, low-carb ketogenic diet. In 2013, in an attempt to stop the 100 or so spasms that seized her body every day, Maddie underwent risky surgery to separate the two hemispheres of her brain, a procedure that can interfere with the neural electrical transmissions that cause seizures.

Nothing worked for more than a few months — and the relentless seizures and potent medications stunted Maddie's development. "She was bright and curious," says Liz; as a tot, she'd been speaking in phrases, dancing to The Wiggles and kicking a soccer ball. "But with the seizures, she lost some of her skills."

LOOKING FOR A MIRACLE Totally desperate, 16 months ago, the Gormans took a major leap of faith: Liz and her daughter moved to Colorado from their home in North Carolina, leaving everything behind — Brandon, whose career supports the family, as well as Liz's parents, siblings, and friends — to get access to a controversial new treatment that's having stunning results in some children with serious epilepsy for whom standard medicine has failed.

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So what is this groundbreaking therapy? It's medical marijuana — specifically, a pungent green cannabis oil called Charlotte's Web. Made up mostly of cannabidiol (CBD), an antioxidant, and containing trace amounts of THC too small to create a high, it seems to reduce seizure activity in the brain for reasons doctors don't yet fully understand. Dozens of children with intractable epilepsy have dramatically improved on it — including Maddie, who takes one drop in the morning and one at dinner and now suffers just a few seizures a day rather than 100. "This treatment," says Liz, "has been the biggest blessing of our lives."

Yet it's clouded by controversy. Though medical marijuana has been recommended for adults for years to combat conditions like glaucoma and pain, its use in kids is less common. "We don't know what it does to the developing brain. No one has studied it," says Columbia University Medical Center neurobiology expert Margaret Haney, Ph.D. Added to that, medical marijuana is legal in only 23 states and Washington, DC — and Charlotte's Web is available only at two dispensaries (and one store) in Colorado and one in California.

Still, when word spread in 2012 about the "miracle" oil curing children's seizures, families began flocking here; now Colorado Springs is home to as many as 300 medical-refugee families, according to Realm of Caring, a nonprofit that helps parents obtain the oil for their children. Liz, a conservative Republican who had never thought much about medical marijuana legalization prior to Maddie's illness, has become an outspoken advocate for it. Charlotte's Web isn't "pot for tots," she says: "My daughter isn't getting stoned. This oil has given us hope."

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A MOM'S ANGUISH Maddie's seizures began after about a year of chemotherapy for infant acute lymphoblastic leukemia, a fairly rare illness with a less than 50% survival rate. Through her own personal research, Liz learned that a small percentage of kids could develop seizures after treatment as a result of chemotherapy. So when she was changing Maddie's diaper one night and Maddie's eyes darted rapidly to the side — a signal she was having a seizure — Liz was concerned. "When I mentioned it to our doctor, I could tell he was worried," she says.

After several tests, including an EEG of Maddie's brain, doctors ordered an antiseizure drug; when that didn't work, they added another, then layered on high-dose anti-inflammatory steroids. (Research shows that seizures may be triggered by inflammation.) But Maddie's episodes continued, and the drugs had nasty side effects. "Steroids can cause mood swings," recalls Liz. "Maddie barely slept and cried constantly."

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Two months later, doctors diagnosed Maddie with rare, potentially life-threatening Infantile Spasms. A few weeks after that, the Gormans endured one of the most harrowing experiences of their lives when Maddie spiked a fever and was hospitalized with deadly sepsis. At 4 a.m., her blood pressure plunged, and her breaths became raspy and quick. As she lay on life support the next day, "the oncologist told us he didn't think she'd make it through the night," says Liz, tears spilling out of her blue eyes. "We asked everyone we knew to pray. That was my darkest moment. We almost lost her."

After three and a half days in the pediatric intensive care unit, Maddie began to recover, but she had "lost some of her sparkle. She wasn't as inquisitive, engaged, or energetic," says Liz. At home, her decline continued. About six months after her hospital scare, after being put on a ketogenic diet, Maddie stopped walking and talking. "That was devastating," says Liz, but not as terrifying as what Liz learned over the next couple of years from Maddie's doctors and her own research: If Maddie continued having seizures, she wouldn't develop normally and could die.

Maddie's condition deteriorated. About three years ago, not long before doctors officially diagnosed her with LGS, she developed scary tonic-atonic (tonic denotes "tone," or rigidity, and atonic "without tone") seizures. She'd stiffen, then go limp, dropping her chin to her chest; sometimes she'd stop breathing and turn blue. If she didn't come to after four minutes, Liz inserted a rescue medication into her rectum, "but I couldn't give it to her too soon, because it's so strong, it could make her stop breathing," she says. While Maddie was seizing, Liz caressed her cheek and whispered, "Come back to Mommy."

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The awful seizures gripped Maddie five or more times a day and left her so exhausted, she'd sleep for an hour afterward. "She'd be seizing or sleeping. Not learning, playing, or growing," recalls Liz, tears flowing again. "Brandon was deployed part of that time, so I was often in full-on crisis mode."

Liz tried to stay strong. "My wife is tough," says Brandon. "This is a woman whose husband has deployed to combat four times." Still, the ordeal took its toll. She had nightmares about losing Maddie, and her hair began to go gray. Managing everything alone while Brandon was away was also brutal. Fortunately, Liz's mom, Bea, visited once a month to help. With her mom there, Liz carved out time to run every day, "outdoors with Maddie in the stroller in the morning or at night on my treadmill, to keep me sane."

OUT OF OPTIONSFour and a half years after Maddie's seizures began, the Gormans reached an impasse; nothing seemed to be working. Treatment-wise, they had two options left: brain surgery or Charlotte's Web, which Liz had heard about on Facebook in 2012. "We opted for surgery," she says. "That's how much of an establishment parent I am. I chose to let someone cut into my daughter's brain — a treatment my doctor endorsed — rather than try something that's never been assessed in a trial."

The surgery brought three months of relief. But when the spasms returned, Liz didn't hesitate. Already in touch with parents on a Charlotte's Web Facebook page, she began reaching out for advice on how to make an immediate move to Colorado. In October 2013, Liz, her mom, and Maddie flew there to look at rental homes and begin the application process for Maddie's medical marijuana card. Colorado law requires two physician "recommendations," Liz explains, to secure a card for a person under the age of 18. She took Maddie to two doctors for exams, got the recommendations and filed an application.

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Six weeks later, just before Christmas, Maddie, Liz, and Bea flew to Colorado while Brandon drove a U-Haul full of their things cross-country. The very next day, armed with Maddie's new medical marijuana card, which had arrived at their new home by mail, Liz set off for the marijuana dispensary. She was intimidated: "I'd been around pot in college, but it wasn't my thing," she says. The dispensary reeked of marijuana, and the young, friendly guys who worked there were a far cry from the white-coat-wearing pharmacists she was used to dealing with. But she was elated to walk out with a two-month supply of Maddie's "medicine," a 2,000-mg bottle of oil that cost $100.

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A CHANGED LITTLE GIRLFive days after Maddie started on Charlotte's Web, her seizures seemed shorter and less intense — though Liz refused to get her hopes up. But after a month, when Maddie was consistently having far fewer seizures, Liz finally let herself feel an emotion she'd thought she'd banished forever: hope. "I can't describe the feeling. Relief, wonder, joy. I had a sense of possibilities again. We actually started talking about having another child."

Soon, Maddie started making developmental strides, learning her colors and letters and how to turn the pages of a book and hold a crayon. She seemed happier — looking at books, trying to express herself.

One downside to the move: Brandon won't be able to join the family any time soon, as his job limits his ability to relocate. Admits Liz, "I miss him. We were high school sweethearts." Brandon adds, "We try to talk every day. I worry about them. But there's no question this is the right thing for Maddie."

On a Saturday afternoon last fall, when Liz hosted a Denver Broncos viewing party for four moms and eight children, that much was clear. Wide-eyed and grinning, Maddie looked thrilled to be hanging out with her grandmother. Bea, in town for a 10-day visit, kept an eye on her, alternating between carrying her and walking behind her, holding the handle of the pink harness Maddie wears because she's still unsteady on her feet.

Freed up, Liz chatted with the other moms, who are now her friends. "Liz is one of the first to volunteer to watch someone's child or coordinate food for parties," says Rita Brown, whose 13-year-old son, Tyler, also has LGS. They share a bond no one else can understand, Liz explains: "We have to band together."

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Today, Maddie is doing well enough that Liz plans to put her into a nearby school for kids with autism and special needs. Her neurologist has been impressed by her progress. "There are a few neurologists here who support Charlotte's Web and some who are downright unsupportive," says Liz. "Ours is supportive now, but she took some convincing."

These days, Maddie takes just two antiseizure meds in addition to Charlotte's Web. Though Liz helped lawmakers write a bill that passed in North Carolina last year legalizing the use of Charlotte's Web (and similar oils) to treat intractable epilepsy, it may be some time before the oil is available there — and so for now, Liz and Maddie are staying put.

Whatever it takes to help her little girl, says Liz. "If you've seen your child ravaged by a life-threatening illness, there's nothing you wouldn't try. Maddie may never have a 'normal' life — but this oil is giving her a chance at a future."

WHAT IS CHARLOTTE'S WEB?

The Source: Derived from a strain of high-CBD, low-THC marijuana first cultivated in Colorado, Charlotte's Web gets its name from Charlotte Figi, now 8, the first American child to be treated with it. Right now it's available only in Colorado and California, though growers in several states are developing plants with similar properties. This spring, lawmakers plan to reintroduce a bill in the House of Representatives that would legalize it.

Is it safe?: According to Realm of Caring, cofounded by Charlotte's mom, Paige, data on the oil's effects comes mostly from parent reports. Better info should be available soon, says the University of Colorado School of Medicine's Edward Maa, M.D., who's overseeing the nation's first observational clinical trial on it: "From what we know, it appears to be safe. But we need more data."

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